1. NCHPEG Annual Meeting September 23, 2009 NCHPEG, March of Dimes, Harvard Partners, Genetic Alliance Health Resources and Services Administration Family History for Prenatal Providers

2. Outline Background Overview of project Project developments Demonstration of related family history tool Discussion

3. Family History Risk assessment based on family history: o Personalizes and prioritizes health messages o Shifts the focus of health care from treatment to prevention o But only if providers obtain, interpret, and act on the information

4. Family History in Prenatal Care Challenges: 1. Time for collection 2. EHR almost useless for FH 3. Inadequate provider knowledge 4. Complex and lengthy clinical guidelines

5. Project Overview Three-year cooperative agreement with HRSA (6/09 – 5/12) NCHPEG March of Dimes Harvard Partners/Newton Wellesley Hospital/Mass General Hospital Genetic Alliance Produce a family history tool for PCPs delivering prenatal care Interactive Point-of-care Clinical decision support Immediate educational resources

6. The Prenatal Family History Tool Tablet PC Tool database Electronic Risk Assessment Educational Materials Electronic Health Record

7. Work Plan 1. Family history literature review for prenatal, newborn, and lifespan of female patient – August 2009 2. First advisory-committee meeting – Oct. 2, 2009 3. Select and confirm clinical sites – December 2009 4. Adapt HughesRiskApps TM for use in the prenatal setting – July 2010 Risk algorithms, functionality, user interface 5. Develop patient and provider educational materials– July 2010

8. 6. Evaluate the impact on the knowledge and behavior of prenatal providers – July 2010 – December 2011 7. Implement and evaluate pilot Tablet-PC, web-based, and hard-copy versions of tool in clinical sites – March 2011 8. Disseminate the tool through professional societies, national meetings, and health resource websites – December 2011 – May 2012 9. Develop a detailed set of recommendations for the integration of family history information into EHRs – 2012 Work Plan

9. Clinical Site Selection 1. In-house “champion” 1. Any volunteers? 2. Existing IT infrastructure 3. In-kind resources 4. Collaboration on evaluation 5. Access to genetic services 6. Diversity 1. Geographic 2. Provider 3. Patient

10. Determining Scope of Tool Prenatal vs. perinatal/pediatric vs. lifespan of patient Number of conditions vs. algorithm complexity/time for data entry Will include both monogenic and complex disorders Fragile X Pre-term birth Newborn screening Can we incorporate risk assessment and education for other conditions? Hereditary cancer syndromes Osteoporosis

11. Demonstration

12. Questions?

13. Partners NCHPEG Joseph McInerney Emily Edelman March of Dimes Siobhan Dolan Bruce Lin HRSA Penny Kyler Michele Puryear Harvard Partners/NWH/MGH Kevin Hughes Brian Drohan Adam Woflberg John Sharko Genetic Alliance James O’Leary Vaughn Edelson